Possible Interstitial Cystitis - how do you manage it?

[kitz90]

Hi all, I’m 44 years old. 7 months ago I ended up in A&E for ‘likely’ kidney stones (though no scan was ever done so I don’t know for sure).

Since then I’ve been plagued with UTIs having had maybe just one or two before. I’ve been on numerous short courses of nitrofuratin which takes the edge off but the minute they stop the pain is full force again.

GP thinks it’s IC. I’m awaiting a cystoscopy. An ultrasound was done. Shows nothing. The dipstick urine tests = no further action.

I'm phoning the surgery tomorrow to see what else I can try (I was thinking maybe ask about oestrogen pessaries or a longer course of antibiotics). I have ordered Hiprex, given up caffeine and made diet changes.

Is there anything else that’s worked for you?

Thanks : )

I had bladder instilliations I think it was called cystistat which worked well for about 6 months. Tried lots of other things but after a few years mine kind of just went into remission, although I think taking d mannose every day helps keep it at bay and marshmallow root also.

I’m trying a number of things, most based on what I’ve read on MN. I stay hydrated with water, I take D Mannose at the hint of a flare up, I use a vaginal estriol gel twice a week and have started following as many dietary recommendations that I can from the IC website. I think it’s Canadian but has lots of good dietary suggestions that I try and follow.
Dipsticks always show a negative result but a lovely dr that I chatted to through 111 gave me antibiotics last time which did work.
I hope that you get some answers. There have been quite a few threads on MN about IC, it can be so difficult to manage, but wishing you well.

Drinking tons and tons of hot (as you can manage) water helps, far more than cold water for some reason. Might just be me.

I used to constantly get cystitis from sex. Which I appreciate is different.
But eventually I was prescribed an antibiotic, to take one after sex preventatively and I've not had cystitis since. The interesting thing is that I don't take them anymore even if I have the type of sex which always used to cause cystitis, I don't get it, it's like it's out of my system now.
So you might find that regular low level preventative antibiotics could also have that effect for you.

Oh poor you, it is horrible isn’t it. Really awful and relentless pain when not controlled.

For me what has worked is:

1. Diet restriction. I started (on the consultant’s advice) with an exclusion diet for a month or so and then slowly started reintroducing foods one at a time to identify triggers. You can google how to do it.I found my triggers are citrus fruits, tomatoes, tea and coffee. I totally avoid all of them now.
2. Using the ICN food list app to check foods I’ve not added back to my diet yet (eg things I don’t eat often). It is by the interstitial cystitis network and RAG rates food. Really helps to give an idea of what might be an issue.
3. Bladder installations (iAluril) - weekly for six or eight weeks and then monthly after that for the last four years. I was taught by the hospital how to self catheterise. Not doing at moment as pregnant.
4. Diclofenac on prescription to use when I do flare.

Interestingly (for me!) I am currently 13 weeks pregnant and have so far had no bladder issues during the pregnancy. Hopefully that will continue! I think there is a link with hormones - particularly as my first major flare was after a miscarriage - ie when my hormone levels dropped. I’ll be looking at using oestrogen post pregnancy and hopefully that will be the magic bullet.

Also I do have more ´medicinal’ ice cream when I have a flare! It feels like it soothes it a little, although it may just be helping me to feel better in my mind!

Sympathies, it's horrible. I've been using vaginal estrogen pessaries twice weekly for six months after recurrent UTIs and (fingers crossed) have had no infection since. I had to fight for it with one urologist who would have preferred to have me on permanent ABs as I was "only 43", but the second urologist I saw said it was def worth a try and I'm so glad I did.

It's likely to be embedded infection. You need a long course of antibiotics prescribed by a urologist.
I was on one for six months at a low dose

Thank you so so much to everyone who has taken the time to reply. I have felt incredibly isolated with it and it’s started to take over my life. There are some great tips on here x

Keep posting if it helps! About 7 years ago I was almost suicidal from having IC. Begging to have my bladder removed after suffering for years. I still shudder when I think how bad it was and still can't quite believe I don't suffer anymore sometimes.

I struggled for years and have only 1 fully functioning kidney so have to be careful.

i stopped antibiotics and started D Manoose, I took 3 a day and doubled if I thought an infection was on its way.

I cut out all caffeine, raw tomatoes, anything with lemon juice, strawberries, tangerines, pineapple the difference is incredible.

I couldn’t do a car journey previously without stopping every 30 minutes, nighttime visits cold be 6 or more.
I recently did 4.5 hours in the car after 2 large mugs of tea🎉🎉🎉.

My life has changed considerably, it was like having a disability, I have a sensitive bladder not IC.

What changed for you @Shiningout, apart from the supplements you mentioned?

Unfortunately even a low dose of d mannose seems to give me serious bowel issues

@Sago1 your list of food you can’t tolerate is the same as mine.

Just interested that you said ‘raw’ tomato. Does that mean you can tolerate cooked tomato? I assumed that it was both for me but haven’t actually tried both raw and cooked. If cooked is ok for you I might give it another go (I really miss lasagne!)

Get kidneys scanned. Also can have bladder stones. And get a culture grown from urine sample. Ask for kidney referral, and bladder scan.

Cooked tomato is fine I would struggle if I couldn’t eat them, I used to eat cherry tomatoes like sweets in summer, just 1 sets me off!
Have a lasagne🤞.

I'm gonna be completely honest in that it just went into remission after about 9 years. I just stopped getting the bladder inflammation. I honestly was admitted for trying to hurt myself at one point as I was so depressed as my bladder was ruining my life, but then it just started easing up over a few months and now I get a flare up probably once or twice a year. I did have 3 operations to dilate my bladder which also gave relief while I was really suffering.

This is going to sound bonkers, but during the actual flare up, putting a hot water bottle on the soles of your feet can take away that ‘urgent’ feeling.

Longer term, get some high quality D mannose. I call them ‘the magic pills’. I take them every time I have sex and at the mere hint of a UTI. After years of recurrent UTIs, they finally seem to be under control.

IC is an out dated diagnosis, look up embedded uti or CUTI, lots of information there. The NHS is years behind on the science (with a few exceptions of certain urologists) and fob women off with an IC diagnosis and let them suffer.

Watch this short talk on YouTube by Professor Jenny Rohn. It explains a lot.

Before anything else though if you peri or menopausal, try regular vaginal oestrogen, sometimes that’ll fix it.